My sister is sick

I'm no expert, but those symptoms sound very similar to what my sister is going through. Her diagnosis is definite - it's pericarditis. The cause and treatment are in question. It's been heartbreaking because the symptoms come and go and they are not able to resolve it. From what I've read, that's typical off pericarditis. Has this diagnosis been considered for your sister?

She had an ultrasound on her heart about a year ago, it was normal. Was on several antibiotics and has taken ibuprofen and naproxen. I think she still takes ibuprofen.

Here is an update.

They have ran every blood test I think there is, and still nothing. White count high with no apparent reason. Some of the hormone levels were boderline, nothing they would be concerned with but are still watching very carefully. Her fatigue level has increased as has her pain level. They just did another catscan and MRI. All they can see is a white ring around the outside of her lungs, which they presume is fluid, but don't have a cause for it or a name now. She is supposed to see another neurologist and a Rheumatologist soon. They have now tossed Fibromyalgia into the diagnosis mix because her muscles seem to be getting weaker and she has a lot of muscle pain now as well.

Keep giving me ideas. I give them to her, and she talks about them with the doc. Oh, and this last round of blood tests they tested for parasites as well. Nadda.

On the fluid around her lungs....This is the way I understood it. Its a ring, trapped under a membrane all around her lungs now. When it first started, it was mostly on the right hand side of her chest, but has increased now to both sides, and on the scans, now only about an inch of her lungs are not covered, and that spot is on the lower left hand side. There isn't any pressure being put on her lungs. They can't test it because they are afraid to puncture the membrane containing the fluid...said it could be like inserting a needle in a balloon.

We were at the ER yesterday, as her pain was horrible, she couldn't even talk straight. They took another 4 vials of blood (19 this month alone so far) and did chest xrays again, nothing but the elevated white blood count and the numbers were right about the same as a month ago. She described the pain as a burning in her arms and legs and they felt weak, like she had been running for a long time, but the burning sensation was very intense and when added with the increase of pain in her chest, it was just too much. They gave her morphine, and another drug to relax her muscles and that seemed to help a little so they sent her home with more pain meds. She was actually able to sleep for 5 hours straight last night, and she hadn't been able to do that for 4 days. I am getting really scared..

worried sister --

I wanted to reply because it sounds like you and your sister are both going through a rough time right now! If she is dealing with a type of connective tissue disorder (RA, lupus, polymyositis, etc.), then her visit with the rheumatologist will be crucial. It can sometimes take quite a while to get a diagnosis if any of those things are the cause of other issues, but I'd imagine that they'll run a ton of bloodwork on her (key things to look for are any blood count abnormalities [white blood cells, red blood cells, platelets], ANA, rheumatoid factor, any specific antibodies they test for (this will depend on what they suspect initially), ESR, CRP...those are the main ones I can think of to start. The ANA will help rule certain things out if it is negative (for example, 95% of lupus patients have a positive ANA and most of the other 5% have other specific antibodies to help identify their diagnosis), but the ANA does not conclude that one has any specific disease or any disease AT ALL. Rheumatology can be a bit confusing.

I was diagnosed with lupus a few years ago after five years of trying to get a diagnosis. Fluid showing up on my x-rays, CT scans, and echos helped to push my diagnosis forward. I had one doctor say I had fibromyalgia (even though my muscles weren't even sore..) because my bloodwork was not overly conclusive. Later on, other doctors looked at the scans to see pericardial effusions, pleural effusions, and free fluid in the abdomen (all of these documented at different times). As one doctor told me -- fibromyalgia does NOT cause inflammation or fluid in the body, so that was not a sufficient explanation for the problems I was dealing with. If your sister has evidence of inflammation or fluid, I would make sure she is stern to push forward with a rheumatologist to find an explanation for such things. Fibromyalgia can certainly occur in addition to other disorders, but it does not cause inflammation (unlike things like RA, lupus, -myositis, etc.). Key info to know and understand..

Sorry for the long post. I know how hard this must be for you both because I have definitely been there. If she doesn't get answers from her doctors, she needs to not be afraid to MOVE ON and find new ones -- for many people, finding the right doctor to listen and pursue finding the cause of your symptoms (and not just placating you with drugs to treat the symptoms alone) will be the defining factor.

Good luck!
Taiga

P.S. Regarding the white blood cell count, I'm not sure of what can cause a high WBC count outside of infections. Lupus causes my WBC count to be low rather than high, but that might be different in other disorders.

Glad to hear they think they're getting somewhere. I would caution you and your sister to remember that many autoimmune disorders (RA being amongst them) can test negative for years before showing up in bloodwork. If she continues to have bouts of pleurisy (or pericarditis, for that matter), I'd encourage your sister to get tested again...and again and again, just in case. Fibromyalgia does not cause pleuritis, so if it is as her doctor has suggested (pleuritis independent of an underlying cause), then it shouldn't be recurrent as it is most likely from a virus or something.

I don't say this because I think it is still RA -- I have no clue! I'm just saying this as someone who had pleurisy and pericarditis several times over the course of 5 years PRIOR to being diagnosed with lupus. My original rheumatologist also told me that I had pleurisy and fibromyalgia and dismissed me after that point. Five years later, I had several rheumatologists say that he was crazy...I didn't have fibromyalgia at all and that pleurisy or pericarditis don't "just happen for no reason." Another thing that strikes me a little weird is that they are saying the fibromyalgia is blocking the meds from working on the pleurisy. That doesn't even make sense to me. I'm not a doctor, of course, but I have learned a lot about these issues over the past ten years and that just sounds a little strange.

Anyway...off my soapbox. I really hope that they're getting to the bottom of your sister's problems and she will feel better soon!